Sheima Benembarek was born in Saudi Arabia, grew up in Morocco and moved to Canada in 2005. In 2015, she relocated to Toronto ...

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Too much information?

Genetic testing can warn you about serious illnesses lurking in your DNA. The downside is chronic worry — and snooping insurance companies.

By Kylie Taggart

Ethics

November 2015

Two decades ago, I spent long hours in a lab analyzing the genetic makeup of a lovely little Amazonian tree frog to determine its place in our global family tree. I was in awe of the power of genetics. A few years later, I hung up my lab coat and became a health reporter, watching as genetics jumped from the lab bench to a patient’s bedside.

You would think I would leap at the chance to learn the secrets hidden in my own DNA, but when the opportunity came — free of charge, for reporting purposes — I balked.

For the past year, Canadians have been able to have their own genome analyzed, without a medical referral, through a company called 23andMe. According to the company, more than 20,000 Canadians have paid $199 for a test kit. Spit into a container, and six weeks later information on 108 genetic markers associated with disease, ancestry or genetic traits will be at your fingertips. Anyone can do it, so why not me? My first instinct was to ask, what if there’s something horrid lurking in my genes? Happier to stay ignorant, I declined.

Genetic testing is being used more and more frequently in Canada to diagnose, prevent and manage disease. It is called “personalized medicine,” and it has already reduced suffering and undue risk for Canadian patients. Take the case of toxic epidermal necrolysis, a painful skin condition that can be a side effect of some prescription medications. Now a genetic test can identify who is more likely to develop the side effect. Yet if people are hesitant to get tested in the first place, their reluctance could create a major barrier to advancing personalized medicine.

People rarely turn down a test needed for diagnosis, since they have already been living with the symptoms of the disease, explains Allison Janson Hazell, president-elect of the Canadian Association of Genetic Counsellors. Where reluctance is more common is in the predictive setting, when a healthy person is tested to see if they have a marker for disease that may present in the future. “There are people who would prefer to have their head in the sand and not know at all, and there are people who say, ‘I have to know; I have to plan things.’”

My head is in the sand, but for another reason as well. There’s no law stopping an insurance company or future employer from asking for my genetic test results. If I was found to be at risk for future disease, my insurance premiums could go up or I could be denied a job. Once I’ve had a genetic test, there’s no going back.

“When you look internationally, almost every other developed nation has some sort of legislative protection or intervention in this area, and we have nothing,” Senator James Cowan confirms in an interview.

After watching bills tabled and fail in the House of Commons, Cowan chose to introduce a bill of his own. Bill S-201, An Act to Prohibit and Prevent Genetic Discrimination, was supported by the Canadian Association of Genetic Counsellors and 23andMe, but it died when Parliament was dissolved for last month’s federal election. The Canadian Life and Health Insurance Association has pledged that it won’t require a genetic test as a condition for insurance, but it voiced serious concern over Cowan’s more comprehensive bill.

Lacey Benoit, a certified clinical genetic counsellor at the Royal University Hospital in Saskatoon, has had patients who are reluctant to be tested because they fear being denied insurance or worry about “being treated differently.”

To find other Canadians who’ve used 23andMe to peek at their DNA, I took to social media. Imagine my surprise when a reply came from someone in my own family: my cousin’s son.

Unlike me, Terry Bell had no qualms about digging into his genome. Bell was given the 23andMe service as a gift from his lab mates in Montreal earlier this year before he moved to Cornell University in Ithaca, N.Y. A biologist who has done genetic research, he had both an academic and personal interest in the service. He had already met with a genetic counsellor over “strange and unexplained” muscle symptoms that had recently appeared.

Bell says his results were interesting but not surprising (at this point I heaved a sigh of relief for him and for me — we share a genetic link). “Even the things that came back in the health report, none of them, for me, were very shocking. I can look around in my family, and I already know that I have risks without taking the test.” Still, he’s relieved that some of the possible causes for his symptoms, like Parkinson’s disease or early-onset primary dystonia, came back negative.

As a genetic counsellor, Benoit gets referrals from people who have taken 23andMe’s test. In general, she doesn’t recommend it. “I think the way they present the results can be quite misleading.” For example, someone might take the test because they are worried about their family history of breast cancer, and the results say they are not at risk. Benoit points out that the 23andMe test only looks at some of the many genetic markers known to be linked to breast cancer. “It can cause anxiety and offer false reassurance,” she warns.

The level of risk can also be misunderstood, Benoit adds. “We’ve had people referred because they are worried about their risk of cancer based on what the 23andMe results say, and it has really only increased their risk over the general population by a percentage.”

Bell agrees that a person without knowledge of genetics may overreact when they see the results: “I get the impression that as soon as people see a phrase such as ‘slightly increased chance of heart disease,’ they think, ‘I’m going to have heart disease.’” Bell took the raw data provided by 23andMe and loaded it into Promethease, a website that provided him with a more thorough analysis of risk. It showed that in many cases, the risk of disease associated with certain genetic markers was elevated by only a few percentage points.

In their clinics, both Benoit and Janson Hazell find there is widespread misunderstanding of the implications of a genetic test. “I think people put too much weight on how much our genes influence things,” Janson Hazell says. Your genetic code is a bit like a weather report. You may have a mutation that puts you at risk for a disease, but (with the exception of some rare diseases) it doesn’t mean you’re definitely going to get it. Other factors, such as the environment and behaviour, also play a role. Still, the test lets you know if you should bring an umbrella.

At Medcan Clinic in Toronto, you can pay $1,595 to get preventive personal genetic testing with counselling from a genetic counsellor. Benoit thinks this is the way to go for those who want to know more about their genome. “You need to have a health provider involved that understands the test and can explain it to you in a way that you can understand,” she says.

Personalized medicine holds so much promise, from revolutionizing neonatal screening to tailoring which drug will be most safe and effective for you. It would be a shame if a lack of understanding about genetic testing translated into an unwillingness to get tested.

Twenty years ago, I didn’t give my tree frog a choice about having her DNA examined, but today I do have the choice. If it is for a clinical diagnostic genetic test, I will embrace the opportunity for personalized medicine to work for me. But if it is for curiosity, I’m going to say no. Ask me again if and when Canada gets some solid genetic non-discrimination legislation in place. Only then might I consider taking my head out of the sand.

Kylie Taggart is a journalist in Ottawa.

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